We did a thing. A big thing.

Let's just say it is time for a change.  My hard-working husband has been retired for over two years, and he is basking in the goodness of retirement life.  Our daily pace has slowed down, and we are allowing the days to unfold with more flexibility and purposeful rest.  It is wonderful.  Of course, there is always a "honey to do" list that never quite ends, but the urgency of total completion is at a low simmer.

Michael enjoys his part-time consulting work because it keeps his mind in science without all the hassles and stress of full-time employment.  He can be more in control of his schedule and pace.  All in all, it is a win-win.

Surviving the rough Covid year and a half was a challenge, but our family was fortunate not to get sick except for our one son, but he had a short duration of symptoms and recovered well.  We kept ourselves occupied with some home projects that seemed to linger endlessly while discussing what the next opportunities might look like as we transition into a new season of our lives. 

We have been discerning the next right steps to take moving forward in future chapters of our life story.  The time seems right to say good-bye to one place and hello to another.  While this process will be bittersweet, we are choosing to move ahead with courage and deep gratitude.  

Opening our arms and hearts allows us to embrace a posture of creating space for new hopes and dreams.  Exciting new adventures await us on our horizon...

Forget what I wrote about our "slow pace."  We are rapidly packing up our home of thirty years in East Lyme, CT and moving back to my hometown of Boiling Springs, PA!  I will post more about our moving journey as it unfolds.  For now, this new reality seems surreal.  However, with each important decision of building a new home and all the time and energy this requires----"wow" is about all I can say for now.

My Purple Garden

 

Lisa Advocates by Wearing Purple and Communicating

Lisa advocates by wearing purple and communicating. This story is written and told by Lisa and edited by Miles for Migraine team.  Miles for Migraine’s Advocacy Stories highlights the many different ways that health advocacy shows up as individuals advocate for themselves and others. This project is not limited to migraine and other headache disorders, nor is it limited to individuals that personally experience a health condition.

Lisa Wears Purple

I consider myself a walking advocacy story and almost always visible with some sort of purple color on me. I wear purple clothing, sport purple accessories, and often have my hair streaked with a fun purple pop. Thank goodness purple just happens to be my favorite color! This was true even before I knew it was the color that represents headache and migraine awareness.

In public, no matter where I might be, such as stores or doctor offices or walking on our local boardwalk, people will stop to compliment me on my purple attire and especially my purple-streaked hair. This opens up the opportunity to explain why I wear purple in regards to migraine awareness. Invariably people are genuinely interested and curious for more information because they usually know someone who suffers from migraine disease, or sometimes they themselves do. It’s amazing how many random situations come alive with opportunities to advocate! 

For instance, when I learned that purple was the color of headache and migraine awareness, I asked my hairstylist to put a streak of purple in my hair. She was quite inquisitive about the subject of chronic migraine, so I enlightened her. It turned out that she, too, was suffering and thought she just had very bad headaches once a month. I shared my knowledge and experience which, in turn, led her to call my headache specialist for treatment! Now we both wear our hair streaked with purple to spread migraine awareness.

Lisa Advocates at her Doctor’s Office

Another practical opportunity for advocacy is every time I see a new doctor and need to fill out medical forms. I have to list my current condition of chronic migraine and all the medications I take to manage it. The medical assistant and the doctor get an earful as to the significant burden managing chronic migraine is for me, and I explain how my treatment going forward with any new medications must be viewed in light of migraine disease. Many health care workers do not realize the seriousness of disability that comes with coping with migraine disease. A patient has to first and foremost be his or her own best advocate before they can be a good advocate for the rest of society.

Lisa Advocates by Telling her Story

My best migraine advocacy stems from my ordinary, everyday experiences where I find myself in the right place, at the right time, and talking to the right people.

I felt inspired to create a migraine advocacy video that shares a little peek into my day that I might experience while dealing with a migraine attack.  It not only highlights my thoughts and feelings but demonstrates how my husband is affected as well.  My one son “plays the annoying part” of Mr. Migraine.  The short film is entitled, The Unwanted Guest.  It is found on YouTube under AleoMedia production.   

I wanted to share my first publication of my migraine advocacy journey to which  I have been committed for several years now.  If any of you follow me on social media, you are well aware that June is headache and migraine awareness month and the color associated with this cause is purple.  I like to spread my pops of purple anywhere and everywhere. Thank you for always supporting and encouraging me with kindness and compassion.  

Unfortunately, the reality of migraine disability looks and feels like this

and this.        

If I have to cancel plans, please do not take it personally.  It is not because I want to.  It is because I need to.   I am slow.  I am tired, but I am doing my best. 

I continue my advocacy work to educate and help others by trying to erase the stigma of migraine disease.  It is so much more than "just a headache."    

Movement for an important cause

 Recently I participated in Miles for Migraine walk/run event for the purpose of raising awareness for migraine disease and the importance of funding research in this critical field.  This was my first time walking with this awesome group of migraine warriors.  Last year the events around the US were only held virtually due to the pandemic, of course.    

The morning was windy and chilly, so my husband and I bundled up in layers and soaked in the beauty of the Bushnell Park in Hartford, CT, where we joined our fellow comrades.  It was uplifting meeting others and hearing their stories of why they wanted to participate and where they are in their journey living with this disease.  Some of the MD headache fellows from my headache clinic gave their time to support our group by walking or running to raise money for research.  

I was not feeling particularly well that morning because I have been in a rough patch lately that has been lingering; the migraine monster has been VERY annoying.  However, showing up, walking with others, and feeling everyone's enthusiasm was encouraging and empowering.  It reminds me we are all on this path together, and when one person is down, hopefully, another one is up to balance the proverbial see-saw of this crazy existence.

I thank all of you who donated to Miles for Migraine this year.  I am hoping by raising awareness of this disabling disease more people will learn to participate in open and honest conversations with whom they know and love in order to better understand the real facts about living with this invisible, chronic illness.  

I will get you started.  These are facts from the American Migraine Foundation:

1) Migraine is not just a headache---a migraine attack includes a headache, but symptoms also include sensitivity to light and/or sound, nausea, depression, temporary loss of sight, visual disturbances, and more.

2) Migraine is a disabling neurological disease.  It is an inherited disease.  The genes that cause migraine makes the brain react more strongly to certain changes such as reduced sleep, changes in diet, or being dehydrated.  According to the WHO, it is in the top 7 most disabling diseases.

3) Together, we can reduce the stigma of migraine.  Migraine might be invisible, but the men, women, and children living with this disease every day are not.  It is time we all stand up and stand together to bring migraine out of the DARKNESS and into the LIGHT.

Since June is the official migraine and headache awareness month, I will post more about how myself and others navigate this wild and crazy roller coaster ride day in and day out.  It is truly by God's grace alone that I can move forward with hope and joy.

I Can See Clearly Now

 "I can see clearly now the rain has gone.  I can see all obstacles in my way..." are the familiar lyrics from the popular song by Johnny Nash.  For a few weeks, I have been singing this song quite a bit in my house.  Even my husband is starting to get annoyed.  You may have guessed, I recently had cataract surgery on both eyes at my ripe old age of soon to be 57.  I thought people in their 70's and beyond had this surgery.  Well, I never fall into the norm of things anyway.  

I knew my vision was worsening for a few years, but these past six months have proven to show a steady decline.  In our house when my husband and I watch TV shows on our rather "large" TV, he puts on the closed caption because he has annoying tinnitus which leaves him hard of hearing, and I couldn't even read the darn words because everything was blurry.  I was squinting and asking him to read the dialogue, and he was turning up the volume which became way toooo loud on commercials. What fun.   If this doesn't sound like the old folks home, I don't know what does.  

After another trip to my eye doctor, I basically couldn't read the first line below the big E clearly.  Ok, time for cataract surgery.  I must report that both procedures went smoothly, and the result is nothing short of a miracle.  My world is beautiful and bright, and now I only need "readers" to see up close.  After a trip to the local pharmacy, I am the proud owner of at least 5 different styles of readers and 2 sunglasses that actually look nice instead of the geeky huge "fit over" the glasses!  That shopping trip was the most fun I have had this entire pandemic!  Well, maybe that is a slight exaggeration.  I can even wear my clip on anti-migraine glare lenses over one of my readers for computer work.  Win win for sure!  Moral of this long story---do not hesitate to have cataract surgery done if you need it.  You won't be disappointed.  

My March Madness has not been one of watching basketball.  Instead I have had one procedure after another and lots of appointments and much coming to terms with my aging body on several different levels.  Mostly all the medical "stuff" has been worked out for which I am very grateful.  It has really left me extra tired on top of already being tired from chronic M.  As I said to my friend recently, I feel like my body and mind are constantly in a weird game of "whack-a-mole" that never really ends.  At one season or another in our lives, we are all bound to feel this way, I guess.  

This brings me to the end of March and ready to bunny hop into April as now I can see all of God's creation even more brightly than before.  I love the rebirth of Spring as I watch the the buds burst forth, hear the birds tweeting sweetly, and feel the warm sunshine on my face.  

This is Holy Week for those who celebrate the Easter Season.  We are slowly returning to church to partake of the sacraments and worship together.  What a feeling of fulfillment after a long, hard year to say the very least.  

Wishing all of you a glorious Easter celebration along with the beauty of Spring which always holds hope for better days ahead.  My husband and I are fully vaccinated now which feels pretty good, I must say.  I am exhaling now with greater ease...

Remember to take good care of yourself so you can offer your love and kindness to this hurting world.  Be well and safe, my friends.

Into my desert with joy and hope

It happened again.  I go about my usual business after the holidays with finding new routines and embarking upon fresh goals----even in this crazy pandemic year-----and then before I turn around right, here is Ash Wednesday! 

 Last year I did not attend church to receive ashes because of the pandemic scare.  My entire rhythm and flow of Lent were completely "off."  I did eventually get settled into my habits of prayer, fasting, and almsgiving, but to tell the truth, the looming fear of Covid took center stage in my heart and mind.  

Since this past year felt SO heavy in many ways, I have decided to enter this holy season with real Christ-like joy and hope.  I am not talking about the world's superficial offerings; they are short-lived.  Rather, I am easing into my desert by asking God to grace me with the courage to strip myself of any false narrative that may be hindering me from fully embracing His love.  

The other day I was filling up ALL of my pill boxes with a plethora of meds as well as supplements for chronic migraine. As much as I feel discouraged at times and frustrated at the amount of prescriptions I need to take just to "manage" my condition, I realize I am fortunate to be able to have them available as well as to afford them. 

If I take these necessary pills and shots and do so with a grateful attitude then I am joyful in my heart and spirit. It erases the negativity that is so easy to fall into such as the feeling of being "old" and sick. (My days feeling young and healthy are pretty much gone.) Letting go of "what if I get worse and the meds will stop working someday" is a fear I must release so I can remain hopeful. Experiencing certain flare ups with a very grouchy head and body requires a strong mindset that allows me time and time again to stay strong and ride the waves until I reach the calm seashore of which I eventually do. My attitude and perspective regarding all aspects of living with chronic migraine must be respected and honored as I walk forward day by day.  

Making my spiritual journey into Lent sometimes seems like a dark unknown, but I have forty days to walk towards the Light of the Resurrection.  Each year is a new experience filled with a holy expectation of God's love and mercy.  It is joyful.  It is hopeful.  It is peaceful.  

May your special time in the desert lead you to a place of renewed faith, joy, and hope especially knowing God will give you rest and calm for your weary souls.  

 @thegracealliance

Rising Again

Our much anticipated new year is upon us, and I venture to guess we are excited to jump in and experience the exciting new possibilities that await us.  However, I believe it is safe to say that maybe we came crawling into this new year with depleted energy on so many levels.  I certainly have.  

For me, surprisingly so, January slipped by in a blur and here it is February.  It has been nearly one year since we have been stuck in this heart wrenching  pandemic mode--- a living nightmare with our deep political divide and much social unrest. While vaccinations are available now and treatment plans are in place, fresh hope is surrounding our sorrowful souls.  Yet there is SO much work to be done.   I ask myself how may I best be part of the healing story?

Living with chronic migraine continually prepares me when life gets extra confusing and spicy.  I can honestly say that my adaptability and flexibility are easier to tap into because I rely on these two important traits to maneuver through many crazy, painful, and exhausting days.  

I stretch and open up my body physically, mentally, and spiritually knowing:

1---I cannot control my environment most of the time, but I can control how I respond to it.

2---I feel "all the feelings" even when they are uncomfortable.

3---I remind myself that I cannot predict how others will respond to my thoughts or actions.

4---I adjust my boundaries according to what my body feels it can handle day by day and even hour by hour.  My chronic migraine is extremely unpredictable and unreliable but "I" am not.  It is the disease that is.  

5---It is very important to create daily time for spiritual rituals like silence, meditation, and prayer to help me stay grounded.  Moving my body gently is so helpful such as in a yoga practice and or walking outside in the fresh air.  Living near the beach is a win win in my book!

6---I trust my tribe and confide my true feelings about how I am feeling day to day.

7---I enjoy reaching out to others in the community, especially online at the present, so I can continue my advocacy work which gives me purpose for my outreach mission.

8---Accept that some days I need to rest ALL day just to reset my tired body and feel refueled once again.  This important resting IS productive.  

9---It is perfectly acceptable to grieve when situations do not turn out the way I had hoped for them to.   Life moves on. 

10----Most importantly, I do my best to live with joyful gratitude for all of my blessings.

These tidbits not only help me to cope day to day but they also help me gain a perspective in coping with some of the larger life issues we still face at the present.  Maybe some of these insights might resonate with you.  I hope so.

I try and offer others heartfelt grace and then give myself some too.  New year, new opportunities to help one another in the healing process as our reality with separated physical contact continues.  In the words of author, Glennon Doyle, "we can do hard things."   Yes, we can!!

 

Waiting is so hard sometimes

Several years ago I wrote a blog post on waiting which happens to be the theme of the Advent season.  I thought it might be worthy of a second read but with some updated versions of my waiting.

One of the most obvious waiting practices this year for all of us has been that of trying daily to keep our patience with this prolonged pandemic.  As the number of cases of sickness and death grow, we wait for relief and healing.  Thankfully some good vaccines are now approved and people will hopefully wait in lines to get vaccinated.  This is a good waiting, I believe.

My heart waits to physically be united with my loved ones to fully embrace once again and not worry. This social distancing is getting really old, but it must be followed if we are to keep others safe as well as ourselves.  

My migraine journey has transformed over the few years, and I am most grateful for being able to live my life enjoying the present moment instead of constantly waiting for my body to cooperate. That particular waiting feels small and frustrating.  However, God sees my waiting, and He is alongside me in this process.

My active waiting has continued to teach me patience with myself as well as with circumstances beyond my control.  Less expecting.  More accepting.  

I believe we are all waiting to cross over into the new year with hope of some better times ahead.  We are exhausted from doing hard things.  But we keep going day after day with all the strength we can muster.  Maybe taking deep breaths while we wait is the most we can do for ourselves and our loved ones.  Let that be enough.

From my heart to yours, I wish you sincere joy and peace this Christmas season has to offer.  May you continue to stay safe and well as you await the beautiful Incarnation of our Savior, Jesus Christ.  

My reality several years ago looked like this:

Here we find ourselves in the beginning of the Advent Season.  For Christians, it is a special, liturgical season when we prepare our hearts for the Incarnation.  It is a most sacred time of interior reflection as well as practicing "waiting".

I don't know about you, but I am not especially gifted with patience and waiting under certain circumstances.  That being said, the more I pray for the opportunity to increase in virtue, the more the good Lord sees fit to answer my requests!  Ouch!  As "they" say, be careful what you pray for.  LOL.

My first week of Advent was mostly spent tethered to my couch or the bed trying to cope with yet another migraine marathon of epic proportion which unleashed its reign of terror on my body for days and nights on end.  Waiting was the only thing (besides begging and praying ) that I could actually do.  I sure had other plans for that first week---like decorating just a bit, looking up some fun cookie recipes, getting some organization to my Christmas lists, and preparing for an upcoming trip for the holidays to visit family, to name just a few.  But, no, my body and its illness had other plans.

So, my waiting began...
wait for the meds to work
wait for the time to take the next dose
wait to be able to open my eyes enough to see where I am going
wait for the passing of the many awful neurological symptoms to abate enough to even move
wait for my husband to come home from work to help me in my fragile state

and on and on the waiting went...  minutes seemed like hours and days were lost.

All the while I waited, I definitely prayed and prayed hard.  I actually did reflect a lot about Advent and how Mary must have felt as she waited those months and days before giving birth to our Savior and then waiting for a place to even labor and bring Jesus into this world.

My struggles are teaching me valuable lessons on waiting.  Waiting can be productive and redemptive if I allow it.  Waiting slows me down and teaches me to live with a more purposeful and intentional mindset.  While I do still pray for healing and certainly much better management of my current chronic condition,  I am always amazed at my ongoing transformation in the journey.

Even if you are not celebrating Christmas due to your own background and tradition, can you still find value in waiting through your own struggles?  Is waiting easy or hard for you?  Maybe helping someone else who might be having a hard time waiting for one reason or another right now would be a great gift to offer this time of year.  Any easing of suffering in the waiting, I can assure you, would be a most generous gift of the heart.

    I decided to call my new orchid  "Advent Orchid" as it started to 

    bloom while I waited.  It bloomed patiently and silently.

    I love learning from Mother Nature as well.